I am sorry this turned out to be more of a vent or rant then informational. All in all, the doctors commended me and my family has supported me. I moved back to the area where I grew up and love the house I found. I have many friends that I know would be there for me if I needed it. Some of them don't understand that I have changed but are getting used to the fact I can't do what I used to. Anyway not near as often. ( A few took it personal I think but there is nothing I can do about it.)
I have not been able to go to a dentist for over twenty years because of my jaw but have not had any problems with my teeth....thank God. They may not look the best but they are mine. My sister sold me her computer ten years ago and that has helped keep me occupied, once I learned how to use it I was hooked. My doctor asked me if was bored and I said no. The days go by so fast. Even doing this blog has seemed a chore though. I read, watch a little tv, play a game on here. Doing my own cooking and cleaning is about all I can do. I then get tired and lay down for a while.
I have never gotten depressed about having Hunter's, just trying to get help was what killed me. You have the doctors amazed at what you have accomplished and the system putting you down and fighting you. I am glad that part is over. If I make to the ripe old age of 55 I will be fine as my pension will be available. I can make it now but no thrills allowed.
Life with Hunter's Syndrome
I am going to try and describe what the genetic problem does to a person. Hopefully, I will help someone in advising how to deal with the physical aspects......also some of the emotional and economic things that will affect anyone that has to get help. These physical problems definitely will change and alter your lifestyle. I am not going to get technical because with all the technical input from all the doctors I have seen never meant anything to me.(I know they are trying to help but I need layman's terms.) All I knew is I was way too young to be feeling this way.
Hunter's Syndrome is a rare disease in which some enzymes are missing. While most people's joints heal the basic ingredient to heal is missing. In other words you age much faster than a normal person. It has affected my hearing, eyesight and many other parts of the body. Actually I am lucky too have a such a mild case as I am now 46 years old.
The story starts at the bottom post and works its way up.
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